I somehow convinced the CEO and the Board President of the Acoustic Neuroma Association that it would be a good idea for me to represent ANA at the 7th Annual International Acoustic Neuroma Conference being held this month.

This was my bright idea, thanks to an offhand remark made by someone at our last board meeting regarding the conference. I agreed to pay my own way. Did I mention it’s in Shanghai?

If I can survive brain surgery, I can survive a trip to Shanghai. Followed immediately by a two day board meeting in Dallas. At least I hope I can.

On a side note, I don’t have the skill set to surf, or ski, or run or bike or make music or fly an airplane like many others who have traveled this AN journey before me. But then, I never did. I always wanted my new normal to be as much the same as my old normal as possible. Honestly, I don’t care that I can’t hear out of one of my ears anymore. I don’t care if I never become skilled enough to surf, or ski, or run or bike or make music or fly an airplane.

But travel is something I have always loved to do. I have traveled to countries where I did not speak the language. I’ve traveled domestically with little or no sleep and functioned just fine. And happily, I think my children have inherited that same love.

What if I won’t be able to travel like I did when I was in my 20’s and 30’s?

35 or so years ago I went to Japan with a tour group. I do not know any Japanese (except counting to five.) After being there for about 5 days, I took a side trip BY MYSELF ON THE BULLET TRAIN to a little city with a big Temple. I got lost, but got found, and made it back home.

30 or so years ago I went to Greece with a tour group and I took a side trip BY MYSELF and went to a beach recommended by my friend Gail. I didn’t get lost, and I (obviously) made it back home.

THIS WHOLE TRIP TO SHANGHAI AND DALLAS IS A SIDE TRIP!

I’m older (ahem) and somewhat hearing and balance compromised. I need more sleep. I have no tour group leader meeting me at the airport to get me to my hotel. Or getting me from my hotel to where the conference is. Or getting me from the conference back to my hotel. I have no time to catch up on my sleeping.

This time, I’m more nervous.

I have to keep thinking and remembering all that I have been able to accomplish in the past five years. I took care of my mom in the hospital, twice, once with a 24 hour turnaround. I took care of Ken in the hospital last fall. I flew and traveled for hours to visit friends and family in California, walking all over town, sleeping in sketchy neighborhood hotels, renting cars, taking the train. I memorized and performed a 30 minute monologue. I volunteered many hundreds of hours doing various projects. I have, on recent occasion, multitasked. I survived.

I appear to be able to rely on myself.

I am posting this update on April Fool’s Day 2015. It would have been my mother’s 84th birthday. I know if she was here, she would be the first one to reassure me. And that is reassuring.

Life changes, moves on, we can choose to look at our past with regret for what is lost, or with renewed-energy for what is possible!

I depart on April 10. The conference takes place from April 12-16. The board meeting is on April 17 and 18. Then I’ll come home. Rumor has it there is no Facebook in China. So, for those who are interested, you can follow me on Instagram (mjbronstein) or Twitter (@marlabronstein.) Otherwise, I’ll do another post on my return.

If I can survive brain surgery, I can survive a trip to Shanghai. Followed immediately by a two day board meeting in Dallas. I know I can.

I know, me…me…me…..today is the five year anniversary that Norman and I parted ways.

This past summer, on June 10, 2014, I celebrated the 5 year anniversary of my diagnosis, the day I was first introduced to my acoustic neuroma. Norman. That moment is a perfect memory. It was as if my world froze in its place, and I felt like I was drowning in quicksand. Since then, life has been a whirlwind. From diagnosis to surgery was 8 months. (Interestingly—or ironically—I only knew Ken for 8 months before we were engaged.) I guess I prefer fast paced life!

Today, I’m celebrating February 10, 2010.

At the beginning of 2015, when I started thinking about this date, I was 30lbs heavier than the day I was wheeled into surgery, thanks to my aging metabolism. At the beginning of the year, I committed to doing some sort of cardio at least 30 minutes every day and I’ve been pretty honest about doing that! (Now I’m only 10 lbs heavier….I’ll take that small success….)

So many amazing things have happened in the past five years….high school and college graduations. The Army. A book. A new career. Chicago. Hawaii. Elections. Board work. A heart attack (Ken’s, not mine.) Anniversaries. Bat Mitzvahs. Weddings. New babies. Videos. Theatre productions. Music recitals. Too many funerals. I joined the board of the ANA a year ago.

I’m feeling great. I have my two year follow up scheduled for March 12.

On April 10 of this year, I’ll be getting on a plane headed to Shanghai, where I will be representing the ANA at the 7th Annual Acoustic Neuroma Conference. Every month since my surgery, I connect with at least one newly diagnosed AN patient. Every month, I get to pay it forward. This is what I believe.…It could be worse. It’s not cancer. Someone I love might get sick. And die. Or just surprise me and die. (see above)

I’m grateful to you for reading this and sticking with me.
I’m still here. And I really appreciate you for being here too.

I was looking forward to attending my second meeting as a board member and was excited and emotional.

The meetings from Friday through Sunday were engaging and enthusiastic.

Take 13 AN patients– post-procedure and watch and wait.

2 caregivers.

11 care providers. (1 by phone)

1 executive director.

Add ingredients and stir gently yet vigorously for two+ days.

Behold the magic!

The weekend overall was exhilarating and exhausting.

Thanks to all who participated, and thanks also to the members, donors and otherwise supporters of ANA. We do what we do because of those who walked this path before us, to hopefully help to make a smoother road for those yet to travel this road.

Elizabeth Claus calls in from Yale. New board member David handles the AV end of things on the fly.

Apparently, Pop is preferred over coffee for the morning pick-me-up.

Agenda for Day 2. Light topics for discussion. 😉

focused power.

Karla’s award for exemplary vice-presidential-ship. (and for running a kick-ass meeting with the MAB)

This beautiful running jersey was donated by our board member Joel, this shirt will be presented to a randomly chosen member who either joins or renews their membership before the end of the year. (if you just renewed, you can do so again..why wait?)

This is the memoir of a self avowed strong woman, with a “be everything to everyone” stance, traveling into a place of becoming comfortable as a “mere mortal.” She takes us along on her journey toward being able to express fear and vulnerability, toward asking others for help, and toward learning the importance of setting boundaries.

It is my belief that when “bad” things happen to us, we can use that stuff as life enriching fertilizer. Marla Bronstein’s story is a powerful illustration of this idea. In addition, her book is a good, enjoyable read, sprinkled with lots of wisdom, humor, and inspiration.

I strongly recommend this book to anyone taking the acoustic neuroma journey. In addition to the examples of emotional growth, it provides much practical information for various stages of the journey.

Kate Boswell MFT

Presenter on “Coping and Beyond with the Emotional Impact of Acoustic Neuroma” at the 21st Acoustic Neuroma Symposium (Los Angeles 2013)

“A Whole New Normal walks readers through the journey of a person who is confronted with the treatment for an acoustic neuroma. The author gives an honest and vulnerable testimony to the complex emotions, fears and challenges people face with such a life disrupting experience. As a surgeon who treats scores of people for this condition every year, I value this book as an asset for people in all phases of their treatment path.”

Local writers Marla Bronstein, A Whole New Normal, and Marian Exall, A Slippery Slope, both chose to self-publish their work in 2013. Exall has written a mystery novel featuring a female protagonist, while Bronstein’s book is a memoir about her struggle with acoustic neuroma. Learn about their individual writer’s journeys and how their books are faring in the rapidly changing world of publishing. VB’s Brendan Clark will also be on hand to discuss local self-publishing options.

There are only ten copies of the book from the first printing that are not yet spoken for at Village Books.

Earlier this evening, I uploaded the revised (and hopefully last) version of the book to be printed. This one has wider inside margins and the font is a tad bigger, so people with BRAIN TUMORS won’t get headaches reading it!

Sheesh!

I also am pleased as punch to be able to share many lovely words of support, encouragement and appreciation from medical, literary and another AN patient here and on the book cover.

I’m so excited, and very proud of the book, and really really grateful to my friend and uber-talented artist-designer-all-around-reniassance man Les Campbell, for all of his beautiful work making the inside of my book be worthy of the cover he designed to contain it.

It’s three weeks till my reading at Village Books (see here) and I hope to have copies for everyone who wants one.